Trichotillomania: More Tales From the Trenches

I had to cut Annabelle’s hair again.  Well, had to?  I guess it is a choice I make.  For her.  For me?  I don’t know.  She twirls and pulls until it’s so ragged and uneven that it doesn’t feel like there’s much choice but to cut it all to even it out.  But she hates it when I cut it.  It’s always a scene involving a lot of crying.  I hate it, and I admit that I’m not sure that it’s the right thing for me to do.  I feel like either way, she’s screwed: leave it alone and it looks terrible because of what she does to it, or cut it in a very short pixie cut (which looks adorable, for what it’s worth – but that’s not the point, I guess) and leave her feeling angry and powerless.

Just that day – after I cut it – she told me that the dad of a neighbor girl she was playing with that day asked her why her hair is short.  I’ve seen it happen myself – grownups asking her to her face why her hair is short, or asking me right in front of her why her hair is short.  It seems incredibly rude and nosy to me; you would never ask another grownup why their hair is a certain way.  What the fuck do they think?  What do they think she’s going to tell them?  Why do they care?

And yes, she’s been mistaken for a boy.  I was mistaken for a boy when I was a kid on occasion when I had my Dorothy Hamill haircut, so I know how much that hurts.  I know how it made me want to just curl up and disappear from the shame of it.

We’ve been dealing with Annabelle’s hair-pulling for about five years now.  It hasn’t gotten any easier.  We’ve tried fidget toys, band-aids on her fingers, gloves, rewards, and ignoring the behavior.  Everything works for a while, and then she’s back at it.

Someone sent this article to me recently: N-acetylcysteine For Trichotillomania, Skin Picking, and Nail Biting.  I’ve actually read about N-acetylcysteine (NAC) being used to treat trich a number of times over the last couple of years.  Rather than redirecting or preventing the behavior, it’s supposed to somehow work on brain chemistry to control the impulse to pull.  I’m generally not a fan of medicating, but I’ve decided to give this a try – mainly because I’m sort of desperate, and because, technically, this isn’t really a drug, but rather an amino acid that can be purchased at any vitamin or health food store.  (No, I have not consulted with our pediatrician, as he is clueless about trich, as are most doctors, I think.)

It comes in capsule form, and since Annabelle is not yet swallowing pills, I have to open the capsule and mix the contents with juice and have her drink it (we’re starting at 500 mg/day split up into two doses, one in the morning and one in the afternoon).  I thought about sneaking it on her and then decided to just be up front with her.  The first thing I did was tell her, “Did you know that there are lots and lots of other people who pull their hair like you do?”  She looked at me suspiciously; her hair-pulling is a point of stress and contention between us, so she doesn’t like talking about it.  “Yep,” I told her.  “There’s actually a name for what you do.”  “There is?” she asked.  “Yes, it’s called trichotillomania.” Her eyes got big – awed, I guess, by the size of the word to describe what she does.  We said it slowly together a few times until she could pronounce it.  Then I told her that there is a special vitamin that might help her not want to pull her hair anymore.  “But I already don’t want to pull my hair, Mommy,” she said.  “I know, but it’s hard not to, right?  This vitamin might make it easier.  Can we try it?”  She said yes.

A couple of hours after the first dose, she said to me, “Mommy, I think it’s working.”  Bless her heart.

We shall see.  I think it’s going to be weeks – months even – before we can tell if it makes a difference, since her pulling tends to go in cycles anyway.  In any event, I don’t believe this will be a cure – I’m convinced that this is something she’s going to struggle with forever.  But maybe this will help.

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10 Comments on “Trichotillomania: More Tales From the Trenches”

  1. Stacey
    January 4, 2013 at 6:56 am #

    I was curious about the astericked note at the bottom about funding a pediatric study of NAC and why your friend didn’t send you something on that. If you go to the “current research” page & scroll down a bit, you’ll find this:

    “Update: N-Acetylcysteine for the Treatment of TTM in Children
    Principal Investigators: Michael H. Bloch MD, MS
    Clinical Research Coordinator: Kaitlyn E. Panza, BA
    Funded by 2009 Grant Cycle
    Preliminary results of this study were presented at the 2012 TLC Conference. Thirty-nine children with trichotillomania were randomized to NAC or placebo. We found that NAC was not more effective than placebo in treating the symptoms of pediatric trichotillomania. However, we found that children in both the placebo and NAC groups significantly improved during the course of the 12-week trial. Additionally, side-effects from NAC treatment were similar to that observed in placebo. However, one child had an allergic reaction to the active NAC tablets.

    This trial highlights the need to focus on understanding the developmental and clinical course of this condition in children. Specifically, longitudinal studies examining the likelihood of children remitting over time are critical to properly understanding, treating and researching this condition. It also emphasizes the importance of referring children with TTM to appropriate behavioral therapy, which has been shown to be effective in children, before initiating any pharmacological interventions.”

    I’m not saying don’t keep doing it, just know that it doesn’t seem as effective on kids as it did on adults. I really hope this is what works for Annabelle. I can hear the hurt in your voice, and I know how much having your hair cut can hurt a young girl (I still don’t chew bubble gum) but maybe this plus having a name for it plus the behavioral stuff plus just you being a great mom to a great daughter might be what works.

    • Lisa
      January 4, 2013 at 2:52 pm #

      Well, that’s discouraging.

  2. Alyson
    January 4, 2013 at 12:08 pm #

    Oh Lisa,I can remember you first talking about this so long ago and I always hoped it would ease up as she got older(obviously I knew nothing about it). I am not a big meds person either, however,sometimes you just have to try and in my opinion a vitamin or supplement is definitely a great thing to try. Cullen has massive sleep issues and we are using Melatonin,I am so thankful for that damn stuff;) I hope that this works just as well for you guys. (((Hugs))) to both of you ladies

  3. Becca
    January 4, 2013 at 5:16 pm #

    Samantha has started twisting and pulling her hair on the sides, so now she’s got a freaking mullet. All that beautiful, long, flowing hair, now the object of hands that don’t know what to do with themselves. She’s upset about it, I know that, and I have to constantly remind her to put her hands/hair down, and I don’t want to upset her. But i worry that it’ll get worse. She twists and knots it into teensy tiny knots that have to be either pulled or cut out. I feel like I should have seen this coming – she’s gone from one self-mutiliating compulsion to the next, keeps needing to substitute one for another (you know? I can’t even remember what was before this, but I know there was something…). I felt some serious hope when I read your post, but now I’m not so sure after reading that first comment. 😦

    • Lisa
      January 4, 2013 at 5:29 pm #

      Rebecca, I’m trying it anyway. And that’s exactly how it started with Annabelle – when she was a mere toddler, twirling and twisting her hair into knots that had to be cut out, and it escalated into twisting it until it breaks off 😦 She’s 8 now – we’ve been struggling with this for years.

  4. Holly F.
    January 4, 2013 at 5:53 pm #

    I have nothing of real value to add. Just know that I like the way you gave her the name of it, the comfort in numbers, and the option of the medicine. Bless her heart indeed….she obviously wants to stop so badly.

    I really hope that the amino acid helps.

  5. Michelle
    January 4, 2013 at 7:26 pm #

    My kids were on NAC this year not for trichotillomania but for exposure to a communicable disease they had to take medication for. The easiest and quickest way I found to get it in the younger three (1, 3, and 6) was to open the capsule in a very small serving of applesauce (enough to fill a regular size spoon). It is a little thick but I would let them “wash it down” with another quick spoon of applesauce or water. They didn’t complain much about the taste. It took less time than putting in liquid and I knew they got it all in them. Wishing you and Annabelle the best.

  6. Sheila Kraus
    January 5, 2013 at 2:58 am #

    Thank you for writing this, Lisa. My 8-year-old son pulled a big spot out of the front of his hair and pulled out a significant amount of his eyebrows. I am definitely going to try NAC. He had ADHD and is not doing well in school and I think that contributes to the urge to pull. Anxiety.:(

  7. Molly Guthrey
    January 6, 2013 at 1:47 am #

    I see this psychologist specializes in pediatric trichotillomania. She’s in Ohio, but I wonder if she’d be able to do a consult or recommend someone in your area?

  8. A.
    January 6, 2013 at 2:31 am #

    I was thinking about this the other day, in a very small and subtle part of the film, ‘Young Adult’, Charlize Theron’s character pulls, and has a bald spot buried in her hair. It was something she did calmly while watching TV (she had a lot of anxiety going on in her life). It’s never mentioned and is only a small part of her character, but it was interesting to see it given some recognition.

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